MY PERSONAL ENDO AND PCOS JOURNEY
Hi Honey! So today I am deviating from my usual personal review post to talk about something very delicate and personal that has been going on with me and is starting to impact my work for the Honestly Influenced blog. I hope you are ready to get really real, deep and personal with me!
As some of you may know based on my mentioning it in previous blog posts I have Endometriosis and PCOS (Poly Cystic Ovarian Syndrome). I was finally diagnosed in September of 2020 after over 20 years of trying to figure out the puzzle that is my body and its symptoms to no avail. I spent years feeling isolated and alone, like there was something wrong with me that no one (many doctors included) couldn’t see, explain or help me heal.
The last few years have been especially tough. My weight had ballooned to higher than it has ever been despite my best efforts to eat healthy and stay active, I have been constantly tired, constantly hungry, severely emotional and moody (bordering on depressed), had horrible joint pain, suffered from skin discoloration and acne, was losing hair on my head and gaining it on my face (not peach fuzz, this was the thick dark stuff of nightmares), had severe IBS and was bed bound for a week or longer each month with the worst abdominal, back, pelvic and uterine pain imaginable. Each month during my period I was losing a liter or more of blood with clots the size of my fist. Towards the end, the pain had gotten so bad that I would throw up from it. I would spend the worst nights laying on the bathroom floor switching between crying and throwing up and just begging God to either end my life or end the pain. Even with all these symptoms, doctor after doctor told me that my only choices were birth control or opioids for pain. While I vehemently refused opioids, I did spend years on birth control which simply masked my symptoms and kept me surviving. The thing is, over the last 2 years my husband and I had decided to see if we can conceive so I have not been on birth control which began to just exasperate all my symptoms further.
Towards the end of 2020 with no luck conceiving and my symptoms just continuing to get worse and worse, I was losing hope. That is till late one night while lying under a heating pad, in between silent sobs and throwing up, Instagram saved me. I had been following an artist by the name of Samantha Rothenberg (@violetclair on IG) and she was sharing about her experience with Endometriosis. She was talking about all her symptoms and I was shocked that they were almost identical to mine. She was sharing about how on average it takes women with endo 6-10 years to be diagnosed. She was sharing about how she had to hunt down a specialist and all but force them to perform a laparoscopy (a surgical procedure in which a fiber-optic instrument is inserted through the abdominal wall to view the organs in the abdomen) which is the only way to get an actual endo diagnosis.
At 2 am, my face stained with tears, I googled and found a local endo specialist and made the soonest appointment I could online. Within the first 15 minutes of this appointment my whole life would change as a trained expert looked me in the face and told me not only do I have endo but I also likely have PCOS. He casually explained how it is so common that it has been missed by every general practitioner and OBGYN I have seen since the age of 13 when I was first put on birth control because my first period lasted over a month (I am now 35).
In that moment I felt so many things. I felt vindicated after so many years of sitting in doctors’ offices telling them something is wrong only to be ignored. I felt fear of what it all meant. I felt relief that I finally knew what was happening with my body. I felt anger for all the weeks I had lost stuck in bed suffering vs. living my life. Shame that I wasn’t healthy and my body wasn’t functioning normally. Sadness that the road ahead would not be easy. Confused by what to do next and if I can beat this thing. I felt every feeling at once and to be honest I still struggle with all of that on a daily.
I had my excision surgery on October 26th, 2020, fully going into it thinking it will heal me and I can go back being a “normal” healthy person. Spoiler alert: they did find and remove endo as well as a large uterine cyst, but it didn’t magically heal me. As many endo warriors know, this disease is so much more complicated than that. It involves multi-system dysfunctions happening in the body that all need to be healed in very specific ways simultaneously. It is about ovarian and uterine health for sure, but it also involves your immune system, your nervous system, the gut and your GI tract, your endocrine system, your stress hormones, your mental health and so much more that I am still continuing to learn about. So, every day I learn a little more and take one more step; enact one more lifestyle change in order to lead my body to healing and recovery.
So far, I have begun to eat an anti-inflammatory diet eliminating gluten and dairy as well as my own personal list of food allergens that I discovered after taking the Everlywell food sensitivity test. I also make sure to move my body for at least 30 min a day but most days I do about 45 min of weighted resistance training as well as an hour long walk. Lastly, I have stopped using almost all my beauty products. This is the one change that impacts what I do here for Honestly Influenced.
I have come to learn that many foods, beauty products, household goods and cleaning products have what are known to be endocrine/hormone disruptors in them. To learn more about this you can listen to this amazing Goop podcast with Jessica Helm, post doctoral fellow who researches how chemicals effect hormones. As a result, I have to rethink beauty and the product I allow in my home and very specifically on my skin. I have started the tedious process of eliminating toxic products from my life and switching to all clean, natural and fragrance-free products. Everything I use now has ingredients I understand and know (the Think Dirty app has really helped with this).
I have also cut out all fragrance because I learned that in the US Fragrance formulations are considered a “trade secret” and therefore protected from disclosure – even to regulators or manufacturers. Instead, one word, fragrance, appears on ingredients lists for countless cosmetics, personal care and cleaning products. A single scent may contain anywhere from 50 to 300 distinct chemicals that are totally unregulated and can cause further hormonal disruptions in a body. In a body like mine that already has issues in that department, it is a recipe for disaster and further illness.
I was so worried about how this would affect my work with this blog that I have grown to absolutely love. I knew I didn’t want to stop but I also knew there would be times where I couldn’t review the same product as the girls due to what was in them. Then it hit me that I am not the only woman in my situation. 1 in 10 women suffer from endo, 1 in 8 struggle with infertility, 1 in 8 women develop breast cancer, 5-10% of women have PCOS and a staggering 80% of women suffer from some form of hormonal imbalance and 70% of them don’t even know hormonal imbalance is the cause of their symptoms! There is a need to talk about this, it is absolutely imperative! So, I nervously approached the girls about tweaking our concept just a bit. I asked that they let me review a clean alternative to the product they are reviewing should it not be one that is safe to use for someone like me. Or I should say for the 80% of women who deal with hormonal imbalances. Despite my fear of not being accepted or just being “too much” my Honies were incredibly supportive and encouraging.
So, from now on there will be times when I have to find a clean alternative to the product that is being reviewed. I hope that you still continue to join us and that this change provides you or someone you know with value. I wish more than anything to helps those of you out there who are struggling with things like Endo, PCOS, hormonal imbalance or infertility like I am. I hope we can all learn and grow together into a place of healing and nurturing our bodies.
Just another granola mom! ☺
P.S. If you are going through any of these issues please do not hesitate to reach out to me on IG. I love connecting, sharing knowledge, learning and growing together through our journeys!